Really bad Brain MRI
 

Hi All

I had a brain MRI two days ago and this time the results were fast proberley due to the fact it was not good.

Anyway the results are two new small tumors progression in all other tumors almost as large as when i started. There is a lot of white matter on old tumors (narcosis?). And edema around one and also pushing ventricle over.

I meet with my onc today. Yesterday i had a full body pet scan and i find out those results to day. I am so scared.

The only reason i saw my onc was to get a clearance to fly and now this. He says maybe if nothing else in my body we would go ahead with the gamma knife (cost a lot and I fly to Honolulu) At this stage I'm not sure. He did put the fear in me about radiation narcosis. Don't know what else to do.
I'm trying to stay strong but there are a lot of tears. And I can't sleep again.

Sorry to sound so flat.

luv to all
Jacqui xx

Re: Really bad Brain MRI
 

Hi kiwigirl, I'm so sorry to hear so bad news. But look there is still hope, as many others users much wiser and more experienced than me will tell you. Looking at the history of your tumor it seem that you are elegible for tyverb, a fairly new drugs that targets Her2. It works very well on her2 + breast cancer. And what's more it is a small enough molecule able to pass through the brain membrane, so it's very effective on brain metastasis as well. There is a lot of therapies you can try out. I'm new on this forum, but I'm sure that senior members will comfirm my words. So don't loose hope, keep figthing, though its seems so hard and daunting.

Kykeon

Re: Really bad Brain MRI
 

I am so sorry to read your latest news. I would ask the oncologist for the Tykerb in addition to the Gamma Knife or other radiation techniques you are considering. Tykerb is known to pass the blood brain barrier and may help shrink the brain mets. Tykerb is in pill form, so you won't miss any treatments if you start it before your trip. You can continue to take your daily dose no matter where you are in the world.
I hope the latest news won't interfere with your trip.
I don't know what arrangements you have made with the radiologists for gamma knife in Hawaii or which medical center you are planning to visit for the gamma knife treatment. You might want to consult them or have your latest test results faxed to them before you arrive, so they can prepare for your visit.
You might also enjoy a change in the climate since you are probably experiencing winter while we are in the middle of summer.
Take good care of yourself.

Re: Really bad Brain MRI
 

Just wanted to add my support. Your anxiety is understandable. Have you considered taking some anti-anxiety medication to help get through these difficult days? And nights.
As others have said, hopefully some of the more experienced among us will be along to offer practical suggestions. I just wanted to say "keep the faith". Difficult as it may seem right now.

Re: Really bad Brain MRI
 

Jacqui,

Gamma-knife is very effective in treating brain mets. I think it is good news that all the tumors that had been treated did not show progression. Several members have had to 'zap' new growths once or twice. GKRS is also quite safe.

Sending you good vibes.

Re: Really bad Brain MRI
 

Adding my support. Others here know much more about this subject than I do. I agree with Bonnie about the anxiety meds.

Re: Really bad Brain MRI
 

Thanks guys anxiety meds sound like a good idea. Sorry Jackie but there has been progession in all my tumors. Almost back to original size.

I feel a bit stronger today I've been booked already for the gamma knife centre of Hawaii. That is for the 9th of September. I'm going to call the oncologist that Elaine sugested. Thank you Elaine.

Its strange but i don't feel the way I did last time my mets grew.
Hoping for no decadron. If there is anything I need to do for Gamma knife can you please let me know.

Jacqui xx

Re: Really bad Brain MRI
 

Targeted radiation (which sounds like your plan w/ Gamma Knife) and starting a systemic treatment such as Tykerb/Xeloda would be a strong suggestion to talk to your oncologist about. You need something to cross the blood brain barrier and continue to help knock those brain mets back. It worked very well on my brain mets and on keeping everything below the neck in good order. Best wishes and let us know what your PET results are.

Re: Really bad Brain MRI
 

Hi Jacqui
What can I say you poor girl. So glad you are going for Gamma knife mine was very successful but I have developed necrosis which is very rare with Gamma & unfortunate so my right side is affected causing me problems but at least no progression in the brain. Other tumours stable at the moment. Gamma is quite straight forward and easy so dont worry about that and they can zap them all. They will give you an MRI of the brain when you are there. Sorry but you will need steriods for a bit.


Looking forward to hearing some good news soon on your Pet scan.


Lots of love to you all.


Diane

XXX

Re: Really bad Brain MRI
 

Good luck Jaqui. Thinking of you as you make your way through this set back.
Trish

Re: Really bad Brain MRI
 

Good luck Jacqui and I will be thinking of you as you travel on the 9th!

Re: Really bad Brain MRI
 

Good Luck Jacqui - I can't add much as I am too much of a newbie to this but it seems the ladies here have some good advice and suggestions.

Re: Really bad Brain MRI
 

Gods blessings to you and your family. I will keep you in my prayers!

Re: Really bad Brain MRI
 

Jacqui -
I am pulling for you and praying that the gamma will wipe out all the tumors and you'll be free of them. Will be waiting to hear more. Pam

Re: Really bad Brain MRI
 

Jacqui,

So sorry to hear this news. Wish I could fly to Hawaii and give you a big hug. I'll be thinking of you and hoping for a successful treatment to come your way.

Love,

Marcia

Re: Really bad Brain MRI
 

Hi All

I really want to thank you all for you help. Its been a huge week. My Pet scan was really good all clear from head down. BUT i had had bone mets in my collar bone and spine. For some reason these have died and the bones are healing. The pet scan showed this but my ct did not.

Anyway they have pulled my certificate to fly I have to much edema and they don't want me to go. I'm not on Decadron yet but thinks i will need it two to three weeks. I'm going to try a higher does of boswella first.

So now i have to cancel all my bookings and my poor girls don't get there trip they have been really, really been looking forward to.

I also changed Onc yesterday and found one who will put me on tykerb and xeloda. This is not in our system yet so I'll have to pay. My Radiation Onc did work at Dana Ferber for a while and once i track him down is very good. He is to concerned about all of my edema and narcosis for gamma.

Thank you, thank you, thank you all for so much help luv and support prey's you are a great team and i really do thank you.

For now i sit at home and wait and try to stop these dam growths.

Luv
Jacqui xx

Re: Really bad Brain MRI
 

I am sorry you have to cancel your travel plans, but I am glad your body is okay from the neck down. Tykerb is a good drug. It is supposed to cross the blood brain barrier, so I will keep my fingers crossed that it will wipe out some of those trouble makers in your brain. I think there is some information about applying for financial help from drug companies on the front page of our website. If not I am sure the topic has been discussed. Perhaps you can apply for help to pay for the Tykerb or your doctor can help you get a small supply of Tykerb samples.
Maybe you can travel after you get the edema down.
Take good care of yourself.

Re: Really bad Brain MRI
 

You might could call GSK's Commitment to Access... just ask questions and see if they have any suggestions how you can access Tykerb affordably as a patient in New Zealand. 866-265-6491
http://www.commitmenttoaccess.com/

Re: Really bad Brain MRI
 

Just wanted to give you a cyber (((hug))) and tell you I'm rooting for ya.

Wishing you the very best,

Paula

Re: Really bad Brain MRI
 

Good luck. I think they always make things worse when they tell you about 'potential' side effects. If you were to read the list iboprufen side effects you would be scared. Lots of people had gamma knife on this site this is the best treatment you can have for brain met shoot them all and hold on tight on onto the rocky road, i feel your pain, breathe deep. also I use sleeping tablets i figured that it is worth it.